I Have News! (And, Finally, Some Progress!)

Some of this news is actually 'olds', and I'm really sorry to my family and friends who have been waiting to hear about stuff. It's just taken me a bit of time to get my act together. Also this was meant to be just a quick happy update post but I guess I needed to get a load of stuff off my chest - sorry!

Where to start?

Stairlift

No real news on this. A lady visited sometime ago - maybe a couple of weeks? - to do a means test to see if we're eligible for a grant. We don't know the outcome yet; she said the Grants Officer has a huge backlog so it'll take a few weeks. And even if we're awarded a grant, there's a 6 to 8 week lead time for the stairlift to be manufactured and installed.

Care package

Better news: (scroll down to the bold section if you don't want to read the background!) our social worker has been fighting for us (for what feels like months) to get a much bigger care package to include care for our 3 year old daughter E. Initially, and with great fear and trepidation in case they took her away from us, we approached child services for help. We were very surprised when they flatly refused to get involved at all! We, an advocate, and our social worker, all tried repeatedly but to no avail. This was a huge disappointment; while we were relieved beyond words that they didn't want to take her away, we also recognised that without substantial support we cannot care for her properly and she may not be able to keep living here. Our social worker (from adult services) was very frustrated and disappointed for us, too, and although she wanted to help she didn't know what to do as her management were also refusing to provide care for E. (This all happened after my post on July 1st.) They were willing to increase my care package from the current 90mins per day, but without care for E things aren't sustainable.

I felt really low that child services wouldn't help us, and didn't know what to do. I really don't want E to have to live elsewhere, especially as it would probably be with family who live a couple of hours away, meaning we wouldn't see her very often. I was feeling pretty desperate and despondent. I poured my heart out in a private facebook group for people with severe ME. I got some wonderful support including from parents who had been in a similar situation, and some of them told me about the Disabled Parents Network, who I'd never heard of. My husband Andy contacted them and they advised that social services are absolutely responsible for helping us, including with practical care for E, but it's adult services who are responsible not child services, as E herself hasn't got a need and is not at risk, so the responsibility is with adult services to support me with my parenting role. They sent us some fantastic information about legislation etc. (I will put info about all this in a post I'm planning for the (hopefully) near future about coping strategies for parenting when you have ME.)

http://disabledparentsnetwork.org.uk

Andy explained all this to our social worker L, and gave her all the info he'd compiled (including, by the way, some of social services' own paperwork and policies!). I felt quite awkward about it, but L was brilliant and really welcomed the info, and was enthusiastic about going back to fight our case with management.

We then had quite a long wait (weeks? Longer? I'm not sure...) while L battled on our behalf. She kept presenting the care package she felt we needed, starting with a full time live in carer, but management kept refusing and it kept getting whittled down. After getting our hopes up and then being disappointed again and again and again, we started to think we would never be successful. Our case went up through three levels of social services management. We were advised by a few people that we may need to get a solicitor involved to fight our case, and while we would do anything necessary to make sure E is looked after properly, the idea of getting a solicitor involved felt horrible and stressful.

Thanks to L's hard work and persistence, though, a solicitor was not necessary. One evening a couple of weeks ago, long after she should have been at home with her feet up, L emailed to tell us she'd just heard that management have agreed a care package of 33 hours a week, INCLUDING care for E!!!! 

I had expected to burst into ecstatic tears on receiving the news, but really I think I just felt drained! And also a bit scared as 33 hours a week is nowhere near what we and our social worker think we need. So, after calling my parents with the news, we immediately set about trying to work out how we could make 33 hours work. We came up with some ideas; Andy spoke to our social worker the next day and she said our ideas look good, but will have to be reviewed once it's up and running, as her manager is concerned there's not enough time for everything! So there's hope that it might be increased at some point :-)

This is what I would like to give to our social worker if I could! She is fantastic :-) 

It will take a while to set the new package up as we will need to employ carers ourselves using the direct payment from social services, for a number of reasons. I currently have agency carers who have been (mostly) brilliant, but I have a huge number of different carers (up to seven different carers per week, and often different ones each week), which is not good for me as I'm constantly having to explain things, plus only one or two have really got to know me so the rest don't recognise the signs when I'm not doing well or when I'm overdoing things. Employing a small number of carers directly ourselves will mean consistency and continuity of care, which will be much better for me and may even mean I could go out of the house once in a while. (I know this is a bit of a pipe dream, but a girl's gotta have a dream!) Also, we will specify the start time each day, whereas with the agency there can be a two hour variation in planned arrival time, which means I can't get into a proper rest routine, and which would be no good for our daughter as pre-school has set start and finish times. And, most importantly, the agency carers are not allowed to provide care for children as they are not trained or insured for that.

So we are now embarking on the mind-boggling and slightly scary journey of recruiting staff and fulfilling all the legal requirements for being an employer. Eeeeeeek! There are various organisations who can help us with every step, though, and hopefully we'll find just the right people and it'll all be worth it in the end. We think it'll probably take a couple of months to get the staff in place.

PIP (Personal Independence Payment, aka disability benefits)

I finally managed to apply for PIP in November 2013, although I'd needed to apply much earlier but wasn't up to it. Not that I was really up to it in November either! Anyway, I got the form back to them in December, and have been waiting for a decision ever since. In July I finally had a visit from an assessor, which was a fairly horrific TWO AND A HALF HOUR appointment! By the end I was in a terrible state, and it wasn't exactly easy or quick to recover from! I was relieved, though, that she saw the reality of the physical effect on me of the appointment; she could see my muscles spasming and that I couldn't hold my head up and could barely talk, etc. My biggest fear had been that I would get an adrenaline surge, giving her a falsely good impression of how I am, but I felt that this didn't happen and that she saw reality.

We were expecting the decision to take a few weeks, but not as long as this. However, I finally received the DBE (Dreaded Brown Envelope) today - 42 weeks after I first applied!! - and the letter inside informed me that I have been awarded the enhanced rates of both the Daily Living and Mobility components of PIP. Phew!!

The DBE

Bittersweet

I feel a bit weird about all of this. With PIP, as with positive news about the stairlift and the care package, I didn't react at all as I'd expected. There was no hysterical laugh/crying. I don't even feel particularly happy, which seems very ungrateful! I am HUGELY relieved and thankful, as we desperately need all three of these things and they will each have a big positive impact on our lives and our ability to cope. But I also feel incredibly drained by all the stress and the waiting.

And, to be honest, I feel kind of fed up. I know we're very fortunate to be getting all this help, and I truly AM grateful, but I don't want it. Or rather, seeing as I need it, I'm glad we're getting it, but I wish I didn't need it. To me, the stairlift means a bit of freedom, a chance to have more choice and control, to have a bit more involvement in family life; but really, who expects to need a stairlift in their thirties?! The care package means E can get the care she needs and keep living at home, and my health may be a bit more stable, and will hopefully take a LOT of pressure off Andy and help him to cope; but I don't WANT strangers in my home caring for me and my daughter, I want to properly be her mum, I want to look after her myself, and I want us to be able to get on and live our lives independently and be a normal family, whatever that is. And PIP will go some way towards helping with all sorts of extra expenses that we have because of my illness and take a bit of financial pressure off, but I want to be healthy and out working or running my business again, rather than having to rely on benefits.

I have tears.

I know, I know, I'm being very grumpy and ungrateful. This stuff really does mean a massive amount to me, and I AM thankful, and I know I should be happy, but I guess it's just a reminder of the reality of our situation.

Hmmm, this post totally didn't turn out how I expected! Sorry. Normal chirpy positive service will be resumed shortly...!

Thank you

Thank you SO MUCH to all our family and friends who have supported us so much through all this. Your prayers, encouragement and support have really kept us going. You are all wonderful :-)

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